In short, my body broke in 2011. My hard drive crashed, my wires got crossed, my crayon box lost the primary colors...you get the idea. This blog started as the story of my trip to the Mayo Clinic and how I planned on regaining my life in 2012. Turns out I did regain my life, but not exactly as I planned. This is the story of medical drama, heartbreak, much laughter, and an abundance of gratitude.
Friday, September 6, 2013
A Game Changer, perhaps?
So, I spend a lot of time with doctors.
In fact, this morning I directed someone to the bathroom and instructed them how to label their urine sample.
[Last name first, my friends, then first initial.]
But after my most recent trip to Mayo in May, and the "official" diagnosis of a never-before-seen undiagnosed disease, I decided I really needed a break from the medical world...
...which lasted approximately 72 hours until I landed myself in the hospital with pneumonia. Oops.
So after a few rounds of pharmaceuticals and a most lovely family vacay, my spirit was renewed and ready to embark once again upon the Great Medical Leave of Absence.
Right, you know where this is headed. Didn't last long.
My extra special mystery disease has proven to be progressive and one of my resume boosters is the ability to break formerly functioning body parts while doing absolutely nothing. The giant polka dot elephant in the room knew that eventually this would prove problematic as the disease continued to move, but it has always been more tolerable to blissfully sip my green juice and watch Downton Abbey.
Friends, consider it problematic.
I won't traumatize you with details, but simply put, my inner alien has spent the last few months traveling to my lungs, my bladder, and now my brain. Medical hiatus officially over.
Fueled with renewed vigor to continue searching, in early July I saw a physician about 30 minutes from my home. The doctor listened to my story, examined me from head to toe, and tried to look through my medical records without too many "youhavegottobekiddingme" looks.
A couple "chapters" into my records, he looked me square in the eye and casually told me he knew what was wrong with me.
Um...what? I must have heard you incorrectly?
"Lydia, you have Lyme Disease."
Now, I'd like to tell you that this was some sort of interplanetary cosmic moment where the sun parted cloudy skies, trumpets announced the arrival of silky white horses, and rainbows spilled from the heavens.
Nope. Didn't happen.
My scout's honor very first (thankgoodnessinmyhead) thought?
From my research, my studies, and own health investigations, I knew that Lyme Disease treatment was SUPER controversial. As in people have lost their medical licenses kind of controversial. As in people agree more about politics than they do about Lyme Disease kind of controversial.
I am talking the Sharks and the Jets, people.
And, as a sidenote, haven't I been tested for this before???
So I have spent the last few months taking myself to the Lydia Buschenfeldt School of Tick Borne Disease. I have read countless articles and spoken to PhD students currently conducting research. I snuck into a medical library and read case studies. I spoke to pharmacists and I spoke to herbalists. I joined online forums and asked questions. I read books and interrogated every doctor in my path.
Short of holding a summit of the Deer Ticks of America, I've covered just about everything.
See the thing is, if this really and truly was the path for me, then I wanted to know that the decision I made about treatment was one that was backed by my own personal extensive research and understanding.
I note the controversy, I understand the options, and I have to be able to make the best treatment choice for ME.
So I handed over 15 vials of blood, I researched, and I waited. Then I got called back for more blood, I researched, and I waited. And then I waited some more.
It goes without saying that "waiting" is really a code word for "losing my mind."
Turned out my waiting/stressing/what-if-ing was one heck of a waste of energy.
I do have a tick borne disease. In fact, I have three.
But Lyme? Yea, that was negative.
Yes, friends, I am in possession of two fancy-schmancy tick-borne infectious diseases, Bartonella and Babesia, and an extremely rare (duh) protozoan parasitic tick-borne disease.
I start treatment on Monday, and while I am "excited" to be getting rid of these things, I'm still progressing with much trepidation. I will be taking HEAVY loads of antibiotics that will eradicate everything in sight - good, bad, and in between. While I don't have the best track record with drug side effects, it will likely be the die-off symptoms of the infections that prove to be the most challenging.
Yes, die-off. As in a body of dead bugs.
Feel free to start renting me as party entertainment.
It's a pulsing schedule, so I won't take the drugs every day and I will likely begin to learn the schedule of what days I will be a functioning human being, and what days I'm better off planning to be home. This treatment will likely go on for at least a year, but will be augmented along the way to address all of the different diseases.
It goes without saying that it is next to impossible not to wonder if this is "it." Has this been the problem all along? Have I literally taken up residency in freezing cold Minnesota when I had diseases from a bug the size of a poppy seed?
Yes, of course I wonder. Despite a body full of bugs, I am human.
But wondering is really and truly, an energy vampire. It will suck the life out of me if I let it. I may never know the cause of my hard drive crash. I may never completely reverse my symptoms. That's ok.
The way I figure, I have a lot of diseases.
In fact, I have more diseases than I do fingers and toes.
So, in my book, it can't hurt to start scratching three off the list, right?